Impact of OFF Periods in Caregivers of Patients With Parkinson Disease, Preferred On-Demand Treatments

In 2 abstracts presented at the Virtual ISPOR 2020 meeting, researchers discuss how “OFF” episodes among patients with Parkinson disease may contribute to an increased degree of burden for respective caregivers, with patient preferred on-demand treatments for these episodes also detailed.

In patients with Parkinson disease (PD), “OFF” periods, which are characterized as the reappearance or worsening of motor and/or non-motor symptoms, has been shown to cause a significant impact on the quality of life in patients.

These episodes have implications not only for patients with PD (PwP), but caregivers as well. In a prior study, caregivers of PwP experiencing symptom recurrence reported a greater impact on their paid employment when compared with those caring for patients without OFF periods. Notably, the burden of caring for these patients resulted in the loss of earnings, loss of opportunities, or ability to maintain employment for caregivers.

In 2 abstracts presented at the Virtual ISPOR 2020 meeting, researchers extend the investigation on the degree of burden for caregivers of PwP experiencing OFF periods, with additional insight into patient preferences for available on-demand treatments for these episodes.

Burden of OFF Periods on Caregivers of PwP

In their study examining the association between OFF periods and caregiver burden,1 researchers analyzed data collected between 2017 and 2019 from the Adelphi PD Specific Programme. This cross-sectional, observational US study included input from neurologists, their consulting PwP, and the patients’ caregivers.

Participating patients (n = 235) included those who were prescribed levodopa at baseline, and whose caregivers had voluntarily completed the 22-item Zarit Burden Interview (ZBI; range score, 0-88). OFF periods were physician-reported, with a multiple linear regression analysis used to to determine the association between the number of OFF hours and caregiver burden.

In the study findings, PwP were shown to experience a mean (SD) daily OFF time of 1.67 (1.85) hours. When comparing this figure with caregiver burden, increased daily OFF hours were significantly linked with greater impact shown by the overall ZBI score (+1.62; P = .001). Additionally, several of the ZBI’s domains exhibited an increased impact by increased OFF hours, such as personal strain (+0.91; P = .003), role strain (+0.98; P < .001), relationship burden (+0.42; P = .003), emotional well-being (+0.53; P = .001), finances (+0.13; P = .002), and loss of control over one’s life (+0.27; P = 0.014).

“Increased “OFF” hours among patients with PD were associated with an increased degree of burden for their caregivers, as measured by the ZBI, highlighting the importance of optimal clinical management of “OFF” episodes,” said the researchers.

PwP Preferences for On-Demand Treatments of OFF Periods

Examining the preferences of PwP for on-demand treatments of OFF episodes,2 researchers conducted an online discrete-choice experiment survey, which recruited US adults (18-75 years; n = 300) with self-reported PD for ≥ 5 years or < 5 years with OFF episodes on levodopa.

Patients were polled on factors such as the method of treatment administration (sublingual film) and its related adverse events (AEs), time to OFF resolution (ON), duration of subsequent symptom control, and out-of-pocket costs for 30 doses. Survey data was analyzed by a random-parameters logit model, with results derived by calculating the relative importance of treatment characteristics and willingness to pay (WTP).

Of the 98% of PwP experiencing OFF episodes in the survey, increasing duration of ON periods from 1 to 2 hours was indicated as least important, while avoiding $90 cost was indicated as most important (9.7 times as important as duration of ON). By order of importance when compared with duration of ON, change in treatment administration from injections with site reactions to dissolvable sublingual film without AEs were 8.9 times as important and decreasing time to “ON” from 60 to 15 minutes was 6.2 times as important respectively.

When given a choice of mode, PwP preferred dissolvable sublingual film with potential mouth sores as opposed to inhalation with potential cough or mild respiratory infection (2.2 times as important) or injection with potential site reactions (4.7 times as important). Additionally, the average WTP to move from the least preferred injection with site reactions to the most preferred dissolvable sublingual film without AEs was indicated as $83 and $58 to decrease time to full ON from 60 minutes to 15 minutes.

As researchers note, PwP placed most importance on avoidance of high out-of-pocket costs and mode of administration when choosing an on-demand treatment for OFF episodes. “Time to FULL “ON” was also an important driver of choice,” concluded the researchers.


1. Thach A, Jones E, Gillespie A, et al. The burden of incremental “OFF” hours on caregivers of patients with Parkinson disease—A neurologist/patient/caregiver real-world assessment in the US. Presented at: ISPOR 2020; May 18-20, 2020; Abstract PND86.

2. Thach A, Sutphin J, Coulter J, et al. Preference for on-demand treatments for Parkinson disease-related "OFF" episodes—A discrete-choice experiment. Presented at: ISPOR 2020; May 18-20, 2020; Abstract PP2.

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